Posted 8/1/2017 7:42 AM (GMT -7)
I went on for 8+ years without telling anyone in the workplace. I would do anything I could to avoid having gut issues at work. The one thing that usually worked, and over time ended up being the only way I could get through the days, was not eating. I would go days without food. Sometimes I would eat one big meal at night and spend hours on the toilet before work in the morning... Often it wasn't enough, if I ate enough to sustain - I'd end up running urgently for the toilet mid morning. I could always control it with food intake and drugs, until my last flare up.
This flare up was not responding to anything. I didn't eat, and that worked well - but you can't go on like that forever. I could have taken prednisone AGAIN, but I was already dealing with weight gain, moonface, peachfuzz & acne from past courses. I looked terrible and my tolerance for people was nearly nonexistent. On prednisone, I could barely show my face in a professional environment because of how low my confidence was, how unprofessional I looked/felt, plus I could snap emotionally at any moment. I turned down pred and went on trying to manage with rx medication.
I was going to the GI every month or more, getting blood draws, adding drugs, spending a boat load of my income on doctors, drugs and medical tests. I spent so much that I had spent my max out of pocket within the first few months of the year...
Eventually things got worse. I was literally in a meeting and had to run to the bathroom to poop mid-sentence. I had someone cover, but I knew this was inappropriate, and it showed a high level of weakness. If I didn't run out, I would have had an accident, there was no option but to run. Then one day, the worst happened, a mucus accident on route to the bathroom. Wearing diapers was never something I would have considered. I knew I'd have surgery before doing that.
Well, long story short, it all culminated with me landing hospitalized for septic shock. I laid in an induced coma for weeks and my job obviously found out. A few people knew the minimum prior to that, but after, I was exposed. The shock was caused from my immune system being so weak from being on all the combos of UC drugs.
At that point, I knew surgery was what I wanted to do going forward. I tried entyvio, when the results were less than stellar (meaning none), I made an appointment with the best colorectal surgeon in my city. Of course GI's will offer trials & more drugs, but I didn't want to waste months trying. The moment I met the surgeon, I felt like things were going to be okay and i never looked back. Since surgery, they have been. I lost all the weight, my skin is clear, I am capable of attending whatever, whenever.
So yes, take care of yourself, make sure you can get the time you need when you need it. For me, I was looking at accepting being disabled, diapers, or having surgery - I chose surgery. Now I no longer make excuses or worry about taking time off - I use my vacation time for doing things other than going to doctors.
I'd imagine your situation is that you're under-treated. Go to your GI and get medication to get things to 100%, this way you can stay in the game.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!
Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.